"Life is as hard as you want to make it" - how one mother summed up living with a child with high functioning autism.
My research is about the special needs system and why it is often described using language more reminiscent of warfare. Parents speak of a battle to get their children's needs met and they fight for their children's rights. But teachers also talk about the struggle to get funding and extra help in the classroom. Sometimes professionals from education and health services engage in combat in determining the best type of schooling to offer a child. Family members, especially brothers and sisters, can suffer collateral damage.
There are three aspects to my research:
Modelling the system. The special needs system is not easily defined. It includes aspects of health, education, social care and community provision, but it is malleable. The models explore how the different parts of the system interconnect.
Exploring influences on the system. What has shaped the system and caused it to develop as it has? How have legislation, service delivery, attitudes and expectations influenced the system and how do they contribute to the tensions in the system?
How do stakeholders experience the system? I have been listening to the accounts of parents of children with Asperger's syndrome and high functioning autism, and to health and education practitioners.
Pulling it all together, I am looking at connections between the structure, influences and experiences of the system. Some aspects of struggle stem directly from the system, and it might be possible to make changes to ameliorate these. Others stem from societal attitudes and expectations - a much harder nut to crack, but by bringing them into the open, it offers opportunity for discussion and challenging perceptions.
Why am I doing this? I have a son on the autistic spectrum and I facilitate a parent support group. Parenting a child who is different can be hard, but does it have to be a battle?